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Review
. 2022 Oct:21:100467.
doi: 10.1016/j.lanepe.2022.100467. Epub 2022 Aug 4.

Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response

Evelina Tacconelli  1 , Anna Gorska  1 , Elena Carrara  1 , Ruth Joanna Davis  1 , Marc Bonten  2 , Alex W Friedrich  3   4 , Corinna Glasner  3 , Herman Goossens  5 , Jan Hasenauer  6   7 , Josep Maria Haro Abad  8   9 , José L Peñalvo  10 , Albert Sanchez-Niubo  8   11 , Anastassja Sialm  12 , Gabriella Scipione  13 , Gloria Soriano  10 , Yazdan Yazdanpanah  14 , Ellen Vorstenbosch  8   9 , Thomas Jaenisch  15
Affiliations
Review

Challenges of data sharing in European Covid-19 projects: A learning opportunity for advancing pandemic preparedness and response

Evelina Tacconelli et al. Lancet Reg Health Eur. 2022 Oct.

Abstract

The COVID-19 pandemic saw a massive investment into collaborative research projects with a focus on producing data to support public health decisions. We relay our direct experience of four projects funded under the Horizon2020 programme, namely ReCoDID, ORCHESTRA, unCoVer and SYNCHROS. The projects provide insight into the complexities of sharing patient level data from observational cohorts. We focus on compliance with the General Data Protection Regulation (GDPR) and ethics approvals when sharing data across national borders. We discuss procedures for data mapping; submission of new international codes to standards organisation; federated approach; and centralised data curation. Finally, we put forward recommendations for the development of guidelines for the application of GDPR in case of major public health threats; mandatory standards for data collection in funding frameworks; training and capacity building for data owners; cataloguing of international use of metadata standards; and dedicated funding for identified critical areas.

Keywords: Cohort study; Data sharing; General Data Protection Regulation; Machine learning; Pandemic; Preparedeness; SARS-CoV-2.

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Conflict of interest statement

MB reports grants to UMCU from Janssen Vaccines, Novartis and CureVac, consulting fees from Astra Zeneca, Pfizer, Janssen Vaccines, Novartis,Takeda,Janssen Vaccines and payments from Sanofi for Participation on a Data Safety Monitoring Board or Advisory Board. ET, EC and RJD report H2020 funding for ORCHESTRA. JH reports H2020 funding for ORCHESTRA, funding from the German Research Council for the SEPAN Project, funding from German Ministry of Education and Research for the EMUNE and the INSIDe Project and funding from Volkswagen Stiftung for the E2 project. AS and EV report H2020 funding for SYNCHROS. TJ reports H2020 funding for ReCoDID. All other authors declare no competing interests.

References

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